You Look Okay To Mehttps://www.youlookokaytome.com
The Online Platform for Pain and Chronic Illness.Tue, 08 Jan 2019 02:08:20 +0000en-GBhourly1https://wordpress.org/?v=5.0.3115240170The Problem Netflix’s Documentary Series Afflictedhttps://www.youlookokaytome.com/netflix-documentary-afflicted/
Sun, 09 Sep 2018 22:21:00 +0000http://www.youlookokaytome.com/?p=4273Netflix released a seven-part documentary last month called Afflicted. The series followed the lives of seven people living with chronic conditions. Many hoped the series would provide an intimate insight into what it’s like to live with a chronic condition. In my view, the Afflicted was unable to do this. I watched the series and […]

]]>Netflix released a seven-part documentary last month called Afflicted. The series followed the lives of seven people living with chronic conditions. Many hoped the series would provide an intimate insight into what it’s like to live with a chronic condition. In my view, the Afflicted was unable to do this.

I watched the series and found a number with issues with the representation of the participants and their treatment during the production process. I unpack all of this in my review. Check it out.

]]>4273How Does the Crackdown on Opioids Impact Chronic Pain Patients?https://www.youlookokaytome.com/chronic-pain-controlled-substances/
Fri, 31 Aug 2018 17:00:38 +0000http://www.youlookokaytome.com/?p=4252Over the past few years, my physical health has significantly declined. I used to love being able to sit outside on my patio and read a book with a cup of tea on a cool Autumn day. But even something so simplistic as that is now a major physical burden to me. Because of migraine […]

]]>Over the past few years, my physical health has significantly declined. I used to love being able to sit outside on my patio and read a book with a cup of tea on a cool Autumn day. But even something so simplistic as that is now a major physical burden to me.

Because of migraine disease, I haven’t been able to finish a book in nearly 3 years. Most days I can’t leave my house, even to do something like sit on my porch. And on more days than I care to admit, I can’t leave my bed. I often go weeks without eating more than one or two slices of toast a day. I’ve even ended up in the hospital quite a few times with dehydration because I am unable to walk over to the refrigerator and get a glass of water.

What’s the worst part? None of my doctors believe me.

I suffer from Refractory Migraines,Degenerative Disc Disease, and Ehlers-Danlos Syndrome. Here in The States, there are only two medications that are prescribed to abort a migraine. These medications fall into a class called Triptans or Barbiturates. Being that I have tried multiple Triptans and was allergic to all three, the barbiturate medication, commonly known as Fioricet, is my only option. The problem? Fioricet is a controlled substance and in the past few years the DEA has cracked down on such medications causing those of us in the chronic pain community to suffer more than ever.

There is another class of medications that help me and many others with migraines and those are called opioids. Now you will probably think I am insane for saying this but I am lucky that I have Degenerative Disc Disease. The reason for that is that there are findings on my MRI’s that can show doctors that I truly am in pain, allowing me to get one of the lowest doses of opioid medication prescribed.

My Ehlers-Danlos, which for me is more painful, mostly causes muscular pain due to it being a connective tissue disorder. You won’t see traces of this disease in my spine where my MRIs are often ordered. And if the doctors don’t see it, they don’t believe you’re in pain. You also can’t map or see a migraine the way you can a seizure.

A few years ago if your pain was worsening over time, your doctor would increase your medication. It seems like a simple enough process. But now, everyone is suffering. Including me.

Getting my medication increased is now impossible and I suffer in extreme pain every day of my life. And I’m not alone. Millions of us went to college to get careers that we’ve had to stop because of chronic pain. Medications that are under attack can help someone like me who recently had to sell her home thanks to her extreme chronic pain making it impossible for me to work. And don’t even get me started on the difficulties of being awarded disability.

People with families lose their jobs because those of us with migraines take too many sick days. It doesn’t matter if you’re a single mother or father, or a young adult just getting out of graduate school. Physicians do not want to prescribe the only medications that will help millions of us. And we say “the only” because we have tried absolutely everything else. I have been on everything from Gabapentin to Diclofenac. I even developed a bleeding stomach ulcer a few years back from taking NSAIDs every day. But I am still told that taking them is safer than being on my Percocet.

What proves this is a political agenda, and not one rooted in genuine concern for the people is that alcohol is available nearly everywhere. Something that has no medicinal purposes, and is not regulated in any way apart from the age you can purchase it. I can walk into my local Walmart right now and purchase a bottle of wine.

According to the National Institute on Alcohol Abuse and Alcoholism, “In 2014, the World Health Organization reported that alcohol contributed to more than 200 diseases and injury-related health conditions, most notably DSM–IV alcohol dependence, liver cirrhosis, cancers, and injuries. In 2012, 5.1 per cent of the burden of disease and injury worldwide (139 million disability-adjusted life-years) was attributable to alcohol consumption.”

Yet you can buy alcohol every single day for the rest of your life if you so choose.

And that is the important word here, choice. Because I am not saying alcohol should be illegal at all. Patients should have just as much of a choice in the medication they take as their doctors do. When they talk about side effects and long-term effects, it should be our choice if we decide to endure them. Because for most of us, the side effects are nothing compared to what we deal with from our illnesses. And what is life without being able to ever leave your house? There is no side effect worse than the blinding pain of a migraine, or living in isolation forever, at least not for me. And ultimately, that should be my decision.

]]>4252Brain On Fire – 2018 (Review)https://www.youlookokaytome.com/brain-on-fire-2018-review/
Fri, 31 Aug 2018 11:46:47 +0000http://www.youlookokaytome.com/?p=4248It’s not common to see high-profile films centred around a chronic illness. Usually, it’s a side story or a passing comment. I guess it’s because films that portray illnesses of any kind are subject to a lot of criticism. It makes sense though. A lack of research or misrepresentation can cause negative consequences for people […]

]]>It’s not common to see high-profile films centred around a chronic illness. Usually, it’s a side story or a passing comment. I guess it’s because films that portray illnesses of any kind are subject to a lot of criticism. It makes sense though. A lack of research or misrepresentation can cause negative consequences for people in real life. This is why it’s refreshing to see films like Brain On Fire have it as a central plot.

Directed by Gerard Barrett, the film is based on Susannah Cahalan’s memoir of the same name with Chloe Grace Moretz playing the lead role. It follows a young Susannah as she starts her career as a journalist while working for the New York Post. She experiences strange symptoms like hearing voices and hypersensitivity to noises which progress to erratic behaviour and seizures. Doctors continuously misdiagnose her. Eventually, they find the problem to be a rare autoimmune disorder (anti-NMDA receptor encephalitis). To put it simply, her brain is on fire.

There are two ways I can critique this film. How I feel about the film itself and how I feel about its representation of the condition.

The Film

The film is…okay I guess. The narrative structure seemed very cookie cutter. Things played out one after the other without giving the audience a chance to process what happened. Not a lot of time was taken to delve into the emotions the main character would have felt. When we got those moments, they felt out of place and overly dramatic.

It was difficult for me to connect with Moretz. I can tell this was an attempt for her to get experience in a more grown-up role. I think she gave it a good shot but wasn’t able to fully portray the complexities of the character and her circumstances. To then throw in an undiagnosed chronic illness- it was hard to buy.

By all means, the film wasn’t terrible. In fact, I think the sound design did a great job in providing a more immersive experience to the audience when it came to her symptoms. I just feel like as a film, it didn’t push any boundaries and when it comes to themes like illness I think they missed a good (albeit risky) opportunity to do so.

Representation

As a film, Brain on Fire did not wow me creatively. However, I do admire the efforts made for the representation of being diagnosed with a chronic illness, especially as a young person. I think it’s amazing that Susannah’s story was adapted into a film. I think it’s important for more audiences to see stories like this.

Many chronic illnesses are difficult to diagnose. It’s why many patients go through several diagnoses before doctors get it right. While watching, I had so many “Oh my gosh that happened to me!” moments when the doctors were passing off her illness as stress and drinking too much.

Susannah later gets diagnosed with a mental health condition. Once again, this is something all too common with patients with chronic diseases. It’s tricky because many mental health conditions cause similar symptoms to physical diseases. Unfortunately, because of that, some doctors are quick to accept a mental health diagnosis rather than listening to the patient and investigating further. In the case of Susannah, her disease was caused by an issue inside her brain, which I imagine made it all the more difficult for doctors to see the difference.

I also love the representation of a young person living with a chronic illness. We generally associate disease and illness with age. It’s why no one would offer me a seat on public transport, even when I’m in a lot of pain. Young people aren’t supposed to be sick. But many of us are, so it’s great to see that represented. I think it helps to broaden people’s understanding of living with a disease.

As mentioned before, Brain on Fire isn’t a terrible film, it’s just not exceptional, however, I appreciate the fact that it was made. With more representation like this is film, television and online media, I think it can aid a shift in societal opinions for chronic illnesses.

Brain On Fire premiered at TIFF in 2018 and was released on Netflix in 2018

]]>4248Stories My Anxiety Tells Mehttps://www.youlookokaytome.com/stories-anxiety-tells-me/
Thu, 23 Aug 2018 20:00:48 +0000http://www.youlookokaytome.com/?p=4219You can’t do this My anxiety brain tells me that I can’t win the battle with chronic illness. It tells me that no matter how hard I try and how much I do, chronic illness will always beat me back down into place. In reality, I know that it’s a long battle. It literally may […]

My anxiety brain tells me that I can’t win the battle with chronic illness. It tells me that no matter how hard I try and how much I do, chronic illness will always beat me back down into place. In reality, I know that it’s a long battle. It literally may well be lifelong. But all I can do is try my best. Trying my best IS winning.

My non-anxiety brain tells me that I can do this. That it won’t always be easy but that I can do things to help myself and improve my quality of life. I’m a naturally impatient person and my anxiety takes advantage of that. It’s always there reminding me that the changes I have made so far haven’t made a difference. My non-anxiety brain tells me some of the things have made a difference while others haven’t…YET. It takes time. I have to look long-term and have faith that over time these changes will help my body.

You’re ugly and unlovable.

My anxiety regularly tells me I’m ugly. It tells me that I’ll never meet a partner because no one would want to be with me. It tells me that no one wants to enter a relationship with someone who can barely look after themselves. Anxiety tells me that someone wants a beautiful person. Someone who has drive. Someone who can look after themselves and hold up their end of a partnership. My anxiety tells me that I am not any of those things. I’m not fun or spontaneous any more. I spend my spare time resting and wondering what I can do without pushing my body too far.

Anxiety tells me that I’m unlovable. How could anyone want to voluntarily enter into a relationship with a someone with a life like this? My non-anxiety brain tells me that this present situation isn’t forever. Maybe I don’t bring what I would like to the table, but I do bring lots of other things. I bring compassion, I bring understanding. I bring the ability to nap at any opportunity – it’s not all bad, is it?

People are judging you.

My anxiety tells me all the time that people are judging everything I do. If I ask for help I feel like people are judging me. If I share my story I feel like people are judging me. Even if I put my make up on and make it out the door I feel like people are judging me. I feel like people judge every decision I make and everything that I do. Is this really true?

My non-anxiety brain reminds me that as humans we are naturally quite selfish beings. That’s not to say we don’t have compassion but merely that our first thought in a situation is often about ourselves. For example, if you see someone you know in the street but they ignore you is your first thought “Oh my goodness, why aren’t they talking to me? What have I done to upset them?” or is it “Oh my goodness they’re in a world of their own. Are they okay?” I would say that most of you went with the former. That doesn’t make you a selfish person but it’s merely making my point.

All those thoughts that whizz round my head when my anxiety is in overdrive. All the thoughts about “What does that person think of me?” “Will they be mad at me for that?” “Am I in trouble because I asked for help?” Chances are that the person in question merely thought “Oh okay no problem” and went on to think about their own day; worrying about the things in their own life.

It’s Just Fiction

Sometimes when I’m in a rut and my anxiety is taking over my brain I have to remind myself that it’s just my anxiety telling me a story, and that’s okay, it can tell away. It’s just fiction and it not that interesting anyway.

]]>4219It’s Not Just What You See On The Outsidehttps://www.youlookokaytome.com/on-the-outside-emily/
Mon, 06 Aug 2018 13:59:24 +0000http://www.youlookokaytome.com/?p=4207I don’t look sick, I look like a regular 20-year-old girl. No one would ever know that I am in a constant battle with my own body if I didn’t say it out loud. Since halfway through 2013, I have struggled every single day. Asking why me? Why me? Why did my own body attack […]

]]>I don’t look sick, I look like a regular 20-year-old girl. No one would ever know that I am in a constant battle with my own body if I didn’t say it out loud. Since halfway through 2013, I have struggled every single day. Asking why me? Why me? Why did my own body attack itself?

I was diagnosed with Addison’s disease in September 2013, an autoimmune disease that I will have forever. “You don’t look sick though”, well actually this has a massive impact on my life and sometimes I cannot get out of bed.

Then December 2013, haemolytic anaemia, thankfully this one cleared up and isn’t a forever thing. January 2016, SLE lupus, on the outside perfectly normal except for a couple swollen fingers.

No one understood the pain that I was going through. Typing this and thinking about the pain that my joints and body went through in 2016 makes me want to cry. I can walk, drive, run and for that, I am so grateful but that doesn’t mean I’m not struggling whilst doing it. No matter how normal someone may look, you should never judge a book by its cover. You have no idea what’s going on inside their body.

These medical conditions are a burden on my life, but every day I’m slowly learning how to read my body. Without them, I wouldn’t be who I am, and I wouldn’t have learnt just how strong I am. I’ve just come to the realisation that maybe these conditions are my calling. I need to stop focusing on the negative, use them to my advantage. Help other people struggling, connect with others, and spread awareness.

There is nothing I want more than for more and more people to know about these not so common diseases. I am open to helping absolutely anyone with any problems, big or small. We need to be there for one another. I’ve just started up an Instagram page just to give people some insight on what I and others go through, as no one really sees the behind the scenes.

]]>4207Letters To Lyme Diseasehttps://www.youlookokaytome.com/letters-to-lyme-disease/
Fri, 27 Jul 2018 18:33:15 +0000http://www.youlookokaytome.com/?p=4201Dear Lyme Disease, You’ve been my closest companion and my greatest enemy. You’ve taken experiences, memories, friends, family, and half of my twenties. You’ve shown me the pangs of rejection, and the fair-weathered friends to go with it. I’ve never known such fear of the worst, and at the same time, such acceptance of the worst […]

You’ve been my closest companion and my greatest enemy. You’ve taken experiences, memories, friends, family, and half of my twenties. You’ve shown me the pangs of rejection, and the fair-weathered friends to go with it.

I’ve never known such fear of the worst, and at the same time, such acceptance of the worst raining down. To try to live contentedly while being followed around by a thunderstorm cloud.

You plucked me from college, placed me in the stadium seat to watch my friends graduate, and then a year later you kept me in bed so I couldn’t even walk across the stage when it was my turn. You have secured my place on my couch or in bed every single day without my consent. And have kept me there during all the birthday dinners, the family get-togethers, the weddings, the concerts, and the events I’ve been waiting all year for.

You’ve placed me in chains on the sidelines, while everyone else I know participates in the game.

I want to hold precious babies without my arms aching, lift the crock pot onto the counter myself, give my husband a real hug without my body hurting to be touched, and sleep throughout the whole night without waking up needing more ice.

I hate that while I’m destroying you, you are still destroying me. Whether it be through more pain from herxing, continual misunderstanding, or loneliness. It’s almost like even as I’m “winning” by treating you, I’m still losing.

You’ve intruded on my husband’s life also. I hate that he feels the discouraging anger of knowing he can’t protect me from you. I hate that you’ve brought him into all of this. He hurts too, you know. He feels the ache from the lack of support and misunderstandings—no one remembers to ask how he is doing.

You’ve set me up for failure. Everything I do is a great accomplishment. Loading the dryer and emptying the dishwasher are both signs that I have “won” for ten minutes of that day.

You have rewritten my story in a way that leaves me out of it! You’ve placed me inside a glass box while the world lives around me.

You’ve brought the deep, long, silence. The people who show their support only when they see or hear from you, then leave you in your silent suffering the rest of the days.

How am I supposed to connect with them when the very biggest thing about me is something they can’t understand?!

And the pain…

Thanks for introducing me to the worst ride of my life. Enduring the most pain I’ve ever had until my body shakes from the intensity and crying only brings more discomfort. I’ve never known how much my body can handle, and I’m left surprised that my body wakes up the next morning. You’ve made me feel as if my life is nothing more than pain, and is not worth this ride I didn’t ask to get on.

And even with all that…

You’ve taken away my life, and that’s given me an immense appreciation for living.

You’ve given me such depths of pain that has bridged gaps between myself and others going through hardship as well; sympathy has turned to empathy.

You crept into my relationship and stretched us hard, turning my husband from partner to caretaker, and yet we’re deeper and stronger because of it.

You’ve taken away so many things, and it’s made me appreciate every single small thing.

Because you’ve turned my days to gray, my eyes have been opened to a world of color.

I’ve realized more about life than I knew in the beginning.

I’ve learned to stand on the line between hating all kinds of pain and welcoming it; my perspective on life has changed to accepting a life filled with the highs and lows and calling it beautiful.

]]>4201It’s All Good (Está Todo Bien) – Documentary Reviewhttps://www.youlookokaytome.com/esta-todo-bien-review/
Wed, 20 Jun 2018 19:52:47 +0000http://www.youlookokaytome.com/?p=4153The political and economic turmoil in Venezuela is the cause of a serious medical crisis. There is a dangerous shortage of medical supplies, infant mortality rates are increasing, people are dying and doctors are leaving the country in search of a better life. Despite public outcry, the Venezuelan government continues to refuse humanitarian aid. Está […]

]]>The political and economic turmoil in Venezuela is the cause of a serious medical crisis. There is a dangerous shortage of medical supplies, infant mortality rates are increasing, people are dying and doctors are leaving the country in search of a better life. Despite public outcry, the Venezuelan government continues to refuse humanitarian aid.

There is a focus on real human stories rather than a report of facts and statistics, allowing us to connect with the subjects. We meet a number of people impacted in different ways by the crisis.

Rebeca, a 19-year-old with lymphoblastic leukaemia is pushed to seek medication through social media. Mildred is in remission but fears relapsing due to shortages of medication. Efraím, a young doctor fears persecution for speaking out against the injustices while struggling to live on just $12 a month. Francisco, an activist, risks his life to smuggle medication into the country while Rosalía and Carlos’ Pharmacy is on the verge of closing.

But the documentary doesn’t just offer moments of actuality. We also get an interesting artistic element. Throughout the film, we see almost all the participants engaging in theatre exercises. Consequently, performance becomes an escape, allowing them to act out their emotions, fears, and situations they’ve been in. This takes place on a real stage and is always in black and white, presumably to separate these moments from the actuality. This was a bold move that ultimately paid off. Not only do we understand the situation each participant faces, we get closer to them; we understand their motivations more intimately.

Está Todo Bien is not the tell-all documentary that will provide you with all the facts about the current political climate in Venezuela. But it doesn’t try to be, nor do I think it wants to be. It’s about human beings and how they navigate through their difficult and unfair situation. There is no closure, but I didn’t expect there to be; the crisis continues. I hope with the release of this film, and with the focus on human stories, it can open people’s eyes to what’s happening, and potentially create change.

]]>4153Living With Chronic Pain – Flare Up Day Vlog (VIDEO)https://www.youlookokaytome.com/chronic-pain-vlog-little-miss-crista/
Fri, 18 May 2018 17:50:04 +0000http://www.youlookokaytome.com/?p=4141A lot of people in my life are unaware of how bad Lupus can make me feel. This is mainly because when I have a flare-up, I stay inside. I mean, I can barely get out of bed to use the bathroom so going outside is almost out of the question. It would nice to […]

]]>A lot of people in my life are unaware of how bad Lupus can make me feel. This is mainly because when I have a flare-up, I stay inside. I mean, I can barely get out of bed to use the bathroom so going outside is almost out of the question.

It would nice to provide a little window into what a flare-up looks like. This is why I love LittleMissCrista’s chronic pain vlog and picked it for Video of the Week. She gives her viewers a real look into what it’s like to get through high pain days during. Check out her video and make sure you subscribe to her channel!

]]>4141Here’s How Your Chronic Illness Impacts Your Mental Healthhttps://www.youlookokaytome.com/chronic-illness-impacts-mental-health/
Wed, 16 May 2018 20:37:26 +0000http://www.youlookokaytome.com/?p=4128It’s mental health awareness week. Every year I see this week pass by but never felt compelled to participate. Honestly, talking openly about my mental health is a very new thing. Before I found out I had Lupus, my doctor told me I had depression. According to her, this was the sole cause of my symptoms. […]

]]>It’s mental health awareness week. Every year I see this week pass by but never felt compelled to participate. Honestly, talking openly about my mental health is a very new thing. Before I found out I had Lupus, my doctor told me I had depression. According to her, this was the sole cause of my symptoms. It’s not wrong to say that depression can cause pain and fatigue, because it absolutely can. But in my case, I fit many of the criteria for Lupus and my blood work supported this.

Finally receiving a diagnosis after such a long time is such a relief. The idea that this can be taken away from you is scary. So I hid my mental health to not give any doctor an excuse to ignore my disease.

This was a mistake for two reasons. Firstly, it’s important to be open about your mental health so doctors can get a full picture of what’s going on. Secondly, many chronic conditions can cause mental health issues. How can you get help for this if your hiding it?

It’s been a couple years and my outlook has changed a lot. I’m not as open as I could be, but I’m getting there. Of course, it’s not just me. I asked people in the chronic illness community on Instagram how their chronic illness has impacted their mental health.

I lost the ability to handle conflict, so I lost my voice completely in my relationship. In addition, my anxiety has made leaving the house very difficult. Naturally my self esteem has plummeted as a result. I feel like I’ve lost the tools for making and keeping friends.

I have been ill since last September and was diagnosed in January this year. Learning to come to terms with my diagnosis has been one of the most difficult things I have ever faced. The loneliness and loss of confidence brought my mental health to an all time low. I had to come to terms with not being the person I was a year ago. But I’m just starting to discover that that’s okay. I’m not resentful of that anymore because I’m a fighter and there’s so many beautiful people and communities around me. I won’t let our voices go unheard and that’s what spurs me on

I’ve been suffering with chronic pain since I fell down a flight of stairs almost 7 years ago. It’s been a constant battle against depression knowing that I’m not the vibrant person that I use to be. Especially as my symptoms progressively get worse. All I want is to be whole again.

My chronic illnesses and mental illnesses are intertwined. It’s like a chicken/egg situation at this point, where I can’t even keep track of what’s causing what anymore! The more I learn about myself and all my various physical/mental conditions, the more I understand that they all influence each other. It’s all “health.”

My illness has definitely impacted my mental health… I go through seasons of extreme lowness that usually are on the same wavelength as my flare-ups, as a new medicine regimen or a new coping mechanism comes, I come out of the fog. Feeling useless, unlovable, and like a burden all come with the territory of chronic pain/illness.

]]>41285 Thing That Happen When Your Chronic Illness Isn’t ‘Severe’https://www.youlookokaytome.com/5-things-chronic-illness-isnt-severe/
Tue, 08 May 2018 18:31:12 +0000http://www.youlookokaytome.com/?p=4119There are so many types of chronic illnesses. Too many too list here. What’s more complex is that each illness will vary from person to person. They also vary in levels of severity. You could have two people with the same condition. One may not be able to leave the house while the other can […]

]]>There are so many types of chronic illnesses. Too many too list here. What’s more complex is that each illness will vary from person to person. They also vary in levels of severity. You could have two people with the same condition. One may not be able to leave the house while the other can walk outside and work a full-time job but still deals with crippling fatigue and pain.

One thing I’ve had to learn is to cut myself some slack. Lupus impacts every aspect of my life. At the same time, I’m extremely grateful that I’m not in the severe category. My organs are (mostly) unaffected and although I am photosensitive, I’m still able to go outside in sunny weather on occasion – providing I wear sunscreen.

Although this is all true, I’m still sick. As far as I know, I always will be. But being in the milder category has made me self-conscious. Please do not misunderstand me, I’m not begging to be sicker. But hopefully, highlighting these regressive mindsets will lead to better self-care. Here are four things I’ve noticed.

I downplayed my symptoms

In the early days of my Lupus diagnosis, I didn’t take my symptoms seriously. In my mind, it wasn’t that bad. My aunt died of Lupus complications a while ago. Since I wasn’t like her, I didn’t think I had anything to complain about. But here’s the thing. My pain is still real. Brain fog is a real thing for me. Fatigue can ruin days I’d be excited about. These symptoms are very much real and it’s essential to take them seriously. You only end up feeling worse if you don’t.

I didn’t accept help

This is kind of a knock on effect of downplaying my symptoms. Because I didn’t view what I was going through as “that bad” I would refuse help. I would refuse things that would make my life easier. If there was a lift, even on a painful day, I’d ignore it. I was reluctant to apply for DSA (disabled student allowance) because I felt there were other people that needed it more than me. Eventually, I realised that making life difficult for myself by not taking the necessary help is silly. There is zero sense in making life harder, especially with a chronic illness.

I was hard on myself

Knowing there were people who couldn’t leave their bed and function as well as I, made me extra hard on myself. I didn’t want to take what I had for granted. I would force myself to push through the pain and fatigue which only resulted in me crashing for a week. I’ve now changed my outlook. The best way to be grateful for your health level is the maintain it through healthy practices and being your kind to yourself.

I hid my disease

Having Lupus on the milder end of the spectrum made me feel like I shouldn’t complain or talk about it. But let me be completely honest here, there are still occasions where I do this. I recently got a part-time job. Although I was honest with the company about my Lupus, I hide it from my co-workers. I don’t know why. Maybe I’m scared they’ll think it’s an excuse. Maybe I fear the long confusing conversation where I break down what an autoimmune disease is. Either way, I need to change this. Being honest is better in the long run.

Yes. As they say “it could be worse.” But that doesn’t mean your situation is peachy. Most likely there’s going to be someone whose condition is more serious than yours – but that doesn’t mean you are not struggling also. It doesn’t mean you shouldn’t take your health seriously. I’m saying this to you, but I also need to take my own advice.